,i  #aae? ,,congress  #a/ ,session  ,h4 
,r4 #chhj  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,septemb] #bh1        
#bjag,mr4 ,pallone introduc$ ! foll[+   
bill2 :i* 0 ref]r$ to ! ,committee on   
,en]gy & ,comm]ce  ,a ,,bill  ,to am5d !
 ,public ,heal? ,s]vice ,act to au?orize
 & support ! creation & dissem9ation (  
c>diomyopa?y education1 aw>5ess1 & risk 
assessm5t mat]ials & res\rces to id5tify
 m at-risk families1 to au?orize rese>* 
& surveillance activities relat+ to     
c>diomyopa?y1 & = o!r purposes4  #a4    
,%ort title ,?is ,act may be cit$ z !   
,c>diomyopa?y ,heal? ,education1        
,aw>5ess1 ,rese>*1 & ,tra9+ 9 ! ,s*ools 
,act ( #bjag or ! ,,he>ts ,act ( #bjag4 
#b4 ,mat]ials & res\rces to increase    
education & aw>5ess ( c>diomyopa?y among
 s*ool adm9i/rators1 educators1 &       
families ,"p ,p ( title ,,iii ( !       
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhj;g et seq47 is am5d$ by   
add+ at ! end ! foll[+ new section3     
#cii,v-#g4 ,mat]ials & res\rces to      

increase education & aw>5ess (          
c>diomyopa?y among s*ool adm9i/rators1  
educators1 & families  7a7 ,mat]ials &  
res\rces ,n lat] ?an #ah mon?s aft] !   
date ( ! enactm5t ( ?is section1 !      
,secret>y1 9 conjunction ) ! ,director (
 ! ,c5t]s = ,disease ,control &         
,prev5tion 79 ?is section ref]r$ to z ! 
,director7 %all develop public education
 mat]ials & res\rces to be dissem9at$ to
 s*ool adm9i/rators1 educators1 s*ool   
heal? pr(essionals1 coa*es1 families1   
gu>dians1 c>egiv]s1 & o!r appropriate   
individuals4 ,! mat]ials & res\rces %all
 include--  7#a7 backgr\nd in=mation to 
increase education & aw>5ess (          
c>diomyopa?y among s*ool adm9i/rators1  
educators1 & families2  7#b7 guidel9es  
reg>d+ ! placem5t ( automat$ ext]nal    
defibrillators 9 s*ools1 e>ly *ildhood  
education programs1 & *ild c>e c5t]s2   
7#c7 tra9+ in=mation on automat$ ext]nal
 defibrillators & c>diopulmon>y         
resuscitation2 &  7#d7 recomm5dations = 
h[ s*ools1 e>ly *ildhood education      

programs1 & *ild c>e c5t]s c develop &  
implem5t a c>diac em]g5cy response plan4
  7b7 ,dissem9ation ( mat]ials &        
res\rces ,n lat] ?an #cj mon?s aft] !   
date ( ! enactm5t ( ?is section1 !      
,secret>y1 ?r\gh ! ,director1 %all      
dissem9ate ! mat]ials & res\rces        
develop$ "u subsection 7a7 9 accordance 
) ! foll[+3  7#a7 ,di/ribution by ,/ate 
educational ag5cies ,! ,secret>y %all   
make available su* mat]ials & res\rces  
to ,/ate educational ag5cies to         
di/ribute--  7,a7 to s*ool adm9i/rators1
 educators1 s*ool heal? pr(essionals1   
coa*es1 families1 gu>dians1 c>egiv]s1 & 
o!r appropriate individuals1 !          
c>diomyopa?y education & aw>5ess        
mat]ials & res\rces develop$ "u         
subsection 7a77#a72  7,b7 to p>5ts1     
gu>dians1 or o!r c>egiv]s1 ! risk       
assessm5t = individuals ) or at risk =  
c>diomyopa?y develop$ pursuant to       
section #cii,v-#h7;b77#a72 &  7,c7 to   
s*ool adm9i/rators1 educators1 s*ool    
heal? pr(essionals1 & coa*es-- 7i7 !    

guidel9es describ$ 9 subsection 7a77#b72
  7ii7 ! tra9+ in=mation describ$ 9     
subsection 7a77#c72 &  7iii7 !          
recomm5dations describ$ 9 subsection    
7a77#d74  7#b7 ,dissem9ation to heal?   
dep>tm5ts & pr(essionals ,! ,secret>y   
%all make available ! mat]ials &        
res\rces develop$ "u subsection 7a7 to  
,/ate & local heal? dep>tm5ts1          
p$iatricians1 hospitals1 & o!r heal?    
pr(essionals1 su* z nurses & fir/       
respond]s4  7#c7 ,po/+ on website  7,a7 
,,cdc  7i7 ,9 g5]al ,! ,secret>y1 ?r\gh 
! ,director1 %all po/ ! mat]ials &      
res\rces develop$ "u subsection 7a7 on !
 public ,int]net website ( ! ,c5t]s =   
,disease ,control & ,prev5tion4  7ii7   
,additional in=mation ,! ,director is   
enc\rag$ to ma9ta9 on su* public        
,int]net website su* additional         
in=mation reg>d+ c>diomyopa?y z deem$   
appropriate by ! ,director4  7,b7 ,/ate 
educational ag5cies ,/ate educational   
ag5cies are enc\rag$ to create public   
,int]net webpages d$icat$ to            

c>diomyopa?y & po/ ! mat]ials & res\rces
 develop$ "u subsection 7a7 on su*      
webpages4  7c7 ,def9itions ,9 ?is       
section3 7#a7 ,! t]m s*ool adm9i/rator  
means a pr9cipal1 director1 manag]1 or  
o!r sup]visor or lead] )9 an elem5t>y   
s*ool1 second>y s*ool1 ,/ate-bas$ e>ly  
*ildhood education program1 or *ild c>e 
c5t]4  7#b7 ,! t]m s*ool heal?          
pr(essional means a heal? pr(essional   
s]v+ at an elem5t>y s*ool1 second>y     
s*ool1 ,/ate-bas$ e>ly *ildhood         
education program1 or *ild c>e c5t]4    
7#c7 ,! t]ms e>ly *ildhood education    
program1 elem5t>y s*ool1 & second>y     
s*ool h ! mean+s giv5 to ^? t]ms 9      
section #haja ( ! ,elem5t>y & ,second>y 
,education ,act ( #aife4  7d7           
,au?orization ( appropriations ,= c>ry+ 
out ?is section & section #cii,v-#h1 !re
 is au?oriz$ to be appropriat$          
#a1jjj1jjj = ea* ( fiscal ye>s #bjah    
?r\gh #bjbb4  4  #c4 ,rese>* &          
surveillance activities relat+ to       
c>diomyopa?y  7a7 ,,cdc rese>* &        

surveillance ,"p ,p ( title ,,iii ( !   
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhj;g et seq471 z am5d$ by   
section #b1 is fur!r am5d$ by add+ at ! 
end ! foll[+ new section3  #cii,v-#h4   
,rese>* & surveillance activities relat+
 to c>diomyopa?y  7a7 ,reports on ,,cdc 
national c>diomyopa?y surveillance      
rese>* activities  7#a7 ,initial report 
,n lat] ?an ,janu>y #a1 #bjbj1 !        
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all submit to ,congress an initial    
report on f9d+s & data g5]at$ f         
surveillance & rese>* activities        
conduct$ by ! ,c5t]s = ,disease ,control
 & ,prev5tion to improve ! und]/&+ ( !  
preval5ce & epidemiology ( c>diomyopa?y 
across ! lifespan1 f bir? to adul?ood1 )
 p>ticul> int]e/ 9 ! foll[+3  7,a7 ,!   
heal? c>e co/s1 utilization1 & natural  
hi/ory ( individuals ) c>diomyopa?y1 9  
bo? ! p$iatric & adult population4  7,b7
 ,! numb] ( adults & *ildr5 affect$ by  
c>diomyopa?y1 z well z age-specific     

mortality4  7#b7 ,f9al report ,n lat]   
?an ,janu>y #a1 #bjbe1 ! ,secret>y1 act+
 ?r\gh ! ,director ( ! ,c5t]s = ,disease
 ,control & ,prev5tion1 %all submit to  
,congress a f9al report on ! cont5t     
describ$ 9 p>agraph 7#a74  7#c7 ,public 
access ,subject to p>agraph 7#d71 !     
reports submitt$ "u ?is subsection %all 
be made available to ! public4  7#d7    
,pati5t privacy ,! ,secret>y %all ensure
 t ?is subsection is c>ri$ out 9 a mann]
 t complies ) ! requirem5ts applicable  
to a cov]$ entity "u ! regulations      
promulgat$ pursuant to section #bfd7;c7 
( ! ,heal? ,insurance ,portability &    
,acc\ntability ,act ( #aiif4  7b7       
,improv+ risk assessm5ts = individuals )
 c>diomyopa?y  7#a7 ,9 g5]al ,!         
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 %all develop & make publicly available 
a risk assessm5t = individuals ) or at  
risk = c>diomyopa?y4 ,su* risk assessm5t
 %all1 at a m9imum1 include ! foll[+3   
7,a7 ,backgr\nd in=mation ( ! preval5ce1

 incid5ce1 & heal? impact (             
c>diomyopa?y1 includ+ all =ms (         
c>diomyopa?y & _! effects on p$iatric1  
adolesc5t1 & adult individuals4  7,b7 ,a
 work%eet ) v>iables & conditions = an  
individual or heal? c>e provid] to use 9
 assess+ :e!r ! individual is at risk = 
c>diomyopa?y4  7,c7 ,a work%eet )       
v>iables & /ages ( progression = an     
individual or heal? c>e provid] to use 9
 assess+ :e!r & to :at ext5t            
c>diomyopa?y has progress$ 9 !          
individual4  7,d7 ,guidel9es on         
c>diomyopa?y scre5+s = individuals :o   
are at risk =1 or h a family hi/ory (1  
c>diomyopa?y4  7#b7 ,/akehold] ,input ,9
 c>ry+ out p>agraph 7#a71 ! ,director ( 
! ,c5t]s = ,disease ,control &          
,prev5tion %all seek input f ext]nal    
/akehold]s includ+--  7,a7              
repres5tatives f national pati5t        
advocacy organizations exp]t 9 all =ms (
 c>diomyopa?y2  7,b7 repres5tatives f   
m$ical pr(essional societies t          
specialize 9 ! c>e ( adults & p$iatrics 

) c>diomyopa?y2 &  7,c7 repres5tatives f
 o!r relevant ,f$]al ag5cies4  7c7      
,c>diomyopa?y def9$ ,= purposes ( ?is   
section1 ! t]m c>diomyopa?y means a he>t
 disease t affects ! he>t's muscle      
7myoc>dium7--  7#a7 ! symptoms ( :i* may
 v>y f case to case1 includ+-- 7,a7     
cases 9 :i* no symptoms are pres5t      
7asymptomatic72 &  7,b7 cases 9 :i* !re 
are symptoms ( a progressive condition t
 may result f an impair$ ability ( !    
he>t to pump blood1 su* z fatigue1      
irregul> he>tbeats 7arrhy?mia71 he>t    
failure1 &1 pot5tially1 sudd5 c>diac    
dea?2 &  7#b7 ! recogniz$ types ( :i*   
include dilat$1 hyp]trophic1 re/rictive1
 arrhy?mog5ic "r v5tricul> dysplasia1 & 
left v5tricul> non-compaction4  4  7b7  
,,nih rese>* ,"p ,a ( title ,,iv ( !    
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bha et seq47 is am5d$ by     
ins]t+ aft] section #djd;,e ! foll[+ new
 section3  #djd;,f4 ,c>diomyopa?y rese>*
  7a7 ,9 g5]al ,! ,director ( ,,nih may 
exp&1 int5sify1 & coord9ate rese>* &    

relat$ activities ( ! ,national         
,in/itutes ( ,heal? ) respect to        
c>diomyopa?y1 :i* may include rese>* )  
respect to--  7#a7 causation (          
c>diomyopa?y1 includ+ g5etic causes &   
molecul> biom>k]s2  7#b7 long-t]m heal? 
outcomes 9 individuals ) c>diomyopa?y1  
includ+ infants1 *ildr51 te5ag]s1       
adults1 & eld]ly individuals2 &  7#c7   
/udies us+ longitud9al data &           
retrospective analysis to id5tify       
effective treatm5ts & outcomes =        
individuals ) c>diomyopa?y4  7b7        
,c>diomyopa?y def9$ ,= purposes ( ?is   
section1 ! t]m c>diomyopa?y means a he>t
 disease t affects ! he>t's muscle      
7myoc>dium7-- 7#a7 ! symptoms ( :i* may 
v>y f case to case1 includ+--  7,a7     
cases 9 :i* no symptoms are pres5t      
7asymptomatic72 &  7,b7 cases 9 :i* !re 
are symptoms ( a progressive condition t
 may result f an impair$ ability ( !    
he>t to pump blood1 su* z fatigue1      
irregul> he>tbeats 7arrhy?mia71 he>t    
failure1 &1 pot5tially1 sudd5 c>diac    

dea?2 &  7#b7 ! recogniz$ types ( :i*   
include dilat$1 hyp]trophic1 re/rictive1
 arrhy?mog5ic "r v5tricul> dysplasia1 & 
left v5tricul> non-compaction4  4  7c7  
,,nih report ,n lat] ?an #ah mon?s aft] 
! date ( ! enactm5t ( ?is ,act1 !       
,director ( ! ,national ,in/itutes (    
,heal? %all submit to ,congress a       
report--  7#a7 outl9+ ! ongo+ rese>*    
ef=ts ( ! ,national ,in/itutes ( ,heal? 
reg>d+ c>diomyopa?y2 &  7#b7 id5tify+-- 
7,a7 a rese>* ag5da reg>d+ adult =ms (  
c>diomyopa?y2  7,b7 plans = rese>*+     
c>diomyopa?y affect+ ! p$iatric         
population2 &  7,c7 ! areas ( greate/   
ne$ = su* rese>*4